Why do some with clinical EDS diagnoses test negative for VEDS, but have vascular events?

The "vascular events" that occur in Vascular Ehlers Danlos syndrome (VEDS) include arterial dissection, arterial rupture, arterial aneurysm and organ rupture. When these occur, the result may be an infarct (loss of blood supply), a bleed into an open space or an organ or an occlusion. In addition to these events, individuals with VEDS often, although not always, have a lifelong history of easy bruising. Any or all of these vascular problems can occur in the absence of VEDS, in a "normal" individual. When they do occur, they may occur at a later age than in VEDS, to a lesser degree or much less often. The challenge for the physician is to sort out whether the "vascular event” that the patient describes or experiences is a consequence of normal aging and living, or the consequence of an underlying collagen disorder. The same issues apply when considering vascular events in people with other forms of EDS. If a person with hypermobile EDS experiences a vascular event, the physician will need to consider whether this is coincidence or an association. The research studies that could be done to determine if individuals with other forms of EDS are at increased risk (as compared to the general population) have not been done. Answered by Melanie Pepin, MS, CGC

Bruising is common; vascular rupture, dissection, etc. are not in other forms of EDS. Answered by Peter Byers, MD

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Vascular Emergency Information

Vascular Type EDS is considered the most serious form of EDS due to the possibility of arterial or organ rupture. If a patient presents with signs of chest, abdominal pain (etc.) it should be considered a TRAUMA SITUATION. Patient complaints should be immediately investigated using MRA, MRI, or CT-Scan testing — not x-rays.